Rabbi Josef Ekstein, who had four children die of Tay-Sachs disease, a fatal neurodegenerative condition, founded a program called Dor Yeshorim to screen people and create a database with the test results while providing participants with anonymity. Young people—typically from age 17 to their early 20s—who get tested are assigned a personal identification number and birth date without the year. The program screens for nine conditions common among Ashkenazi Jews—those who can trace ancestry to Central and Eastern Europe—and the information is kept in a database by Dor Yeshorim, which means "upright generation" in Hebrew.
How much to reveal to people remains a contentious issue in the gene-testing field. Some geneticists argue that scientists still have no grasp of most gene mutations' relevance, and that sharing information whose meaning is uncertain is potentially harmful. In some cases, people might endlessly worry or alter their lives because of a mutation for which there is no effective treatment or that turns out to be benign; others may ignore medical advice because genes show they aren't predisposed to a particular condition, even though screening can't rule out the possibility a disease will develop.
Yaniv Erlich, a geneticist at the Whitehead Institute in Cambridge, Mass., who works with Dor Yeshorim on research projects, says the group's decision to share only what it considers "actionable information" is a stance taken by many geneticists. What's unusual is that, in this case, "the marriage is the actionable information," he says.
Still, researchers believe that while risk can be lowered, it can never be completely eliminated. In genetics and love, says Edwin Kolodny, professor emeritus in neurology at New York University Medical Center and chairman of Dor Yeshorim's medical advisory board, "Marriage in most situations remains a lottery where we just take our chances."